The historical problem
For a very long time medical practice has encouraged a certain awe about itself. Very often over the centuries medical practice has been mixed with religious practice which served to further elevate the exalted social status of practitioners: priest (soul) and healer (body). Recently, since the industrial revolution (1800’s) the emphasis has shifted from the supernatural (augmented by some potions containing active medical ingredients) to the worship of science (with only a nod to the supernatural) as the provider of human betterment (postponing death and increasing general happiness).
What fundamental error do both of these approaches have in common? They both assume an all-knowing physician or priest. The sufferer is rarely consulted beyond a few (CYA... “risk management”) forms to quickly sign, usually without reading, which surrender life and death decision making to the practitioner who is thereby released from personal responsibility from all but the most flagrant and provable of errors. This process goes even further to exalt the medical practitioner as all-knowing. There is a provincial master list of ailments (diagnostic codes) and a master list of insurable responses to ailments (billing codes). To be paid, the physician must choose from these lists. The effect is that a sufferer with an ailment which has not made the list, is not considered sick. This is the unacceptable case with ME amongst other diseases. Sufferers who are obviously sick are seen by physicians, who are trained to confine their diagnoses to a supposedly complete list of ailments, and to operate from an assumption that they are all-knowing.
Both of the above assumptions are wrong. The list is incomplete. The physicians are not all-knowing.
The current situation
The ME|FM Society of BC is directly challenging both of these assumptions at their sources.
UBC has 13 medical training facilities ranging from dentists to occupational therapists, nurses etc. This is where the know-it-all (patriarchal) attitude will be changed; within the schools where the medical workers receive their training and learn their attitudes toward patients. UBC and other leading edge universities are consciously modifying all levels and types of medical training to leave behind the established attitude of “treating diseases” and convert to “treating patients” as complete people who are themselves expert in many aspects of the diseases from which they suffer. This means a far more collaborative approach: medical workers with sufferers. It is based on mutual respect. It has been proven to work in a much superior manner to the current approach; especially the currently popular (but clinically ineffective) rhetoric about “patient centred care”.
The ME|FM Society of BC has for over a year been actively participating in preparing the processes required for the re-design of medical worker training and real patient exposure. Happily. The students themselves are very eager for this real life exposure. This bodes very well for the needed changes. This work is done by the very open contributor committee Patients In Education (PIE). PIE’s monthly meetings (and recent forum) are seeing a steadily growing participation of other organizations and their representatives. PIE is an organization of organizations operating separately from the UBC hierarchy.
One of the most important PIE achievements over this past year has been the establishment of Patient Advisory Committee (PAC) high within the UBC medical curriculum revision process. The PAC has a number of approved purposes, but the main one is to “advocate for patients as active collaborators in the role of teachers, assessors, curriculum developers and educational decision makers.” PAC reports directly to the UBC Health Council. Each PAC member is selected from the PIE subject to the approval of the UBC Health Council.
Hope for the future
The medical patriarchal hold of the past century is rapidly evolving. The patient’s voice is now being taken very seriously especially in BC. The days of denial of ME as a legitimate disease are fading fast, and the validity of young specialists in ME to take up research and practice specialty in this rich field is growing already.
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